Hi All-

Sorry I haven't posted since I asked for help in finding temporary housing in Los Angeles. Don, my husband, was going to begin radiation to his lungs after they discovered mets from his tonsil cancer.

These past 6 months have been horrible. In November we found out that the tonsil cancer that they "assured" us was completely gone had mets to Don's lungs...and in addition to that he also has AML (acute leukemia). He was eventually transferred to Cedars Sinai Medical Center in Los Angeles where they were able to put his AML into remission. They were testing for bone marrow transplant when they discovered a mets to his brain and he had to have brain surgery & radiosurgery (radiation). After that they discovered that the mets to the lungs needed to be treated before any bone marrow transplant could occur. The week before radiation was to begin they found another tumor that made radiation no longer an option. He began chemo for the chest/lungs at the end of February and ended last week.

This past Monday they did a CT scan to ascertain if the chemo had reduced the tumors in the chest/lungs and discovered it did absolutely nothing. In addition they found that the tonsil cancer has now moved to Don's bones and liver. They will be starting pallpative radiation therapy to reduce the bone pain and prevent fracture this coming up Monday for 2 weeks. During that time they will be looking for another chemo that might prolong his life...but they are saying they can no longer say "cure". They are giving Don "months". When Don asked "Do I have a year?" they said "no".

As you all can imagine our lives are completely unside down. We went from celebrating 2 years cancer free on Oct. 21, 2005 to his only having months to live. I don't want to give up! I am hoping that any of you that have had or know of someone that has had mets this extensive can refer us to somewhere that might help. The hardest thing is that not only does he have SCC he also has leukemia. I am reading a book on natural cure for advanced cancers, has anyone read it? Does anyone know if it has been successful? In the book they recommend removing all teeth with metal or plastic in or on them...Don has so much that he'd have to have all his teeth removed. I don't think that is an option because of the risk of infection...with the AML his white blood cells don't work like normal.

I'm at my ropes end...help.

Lorie

Lorie,

As a dental professional, I can assure you that your husband's dental work is not contibuting to his cancer and to put him through getting teeth extracted when he has so much going on would be foolish. I wish that the answer to your prayers was as easy as extracting teeth, but I am afraid it is not.

I am so sorry for what you and your husband are going through. This disease is cunning and cruel.
I will keep you both in my prayers.

Barb

Barb-

Thank you so much for responding. We were thinking the same thing about it being foolish to remove his teeth...not to mention life threatening with his AML. Just wanted to put it out there because if someone has actually heard of this working then we might weigh the odds.

Thanks for your prayers.

Lorie

Lorie - I am so sorry for what your husband and you are having to endure. I wish I had something to offer in the way of alternative options. Please know that my thoughts are with you and I will pray for you and your husband that you find treatment available that will help.

Michele

Lorie,

I was so sorry to read what you and your husband are going through. You will both be in my prayers.

It is a shame that people publish books like the one that you are reading. Without knowing anything else beyond that they recommneded extractions, I can tell you to throw the book out. Speaking as a dentist and a colleague of Barb's, you can be assured that unfortunately extractions won't help. Barb, as always, has given excellent advice.

Jerry

Would you please post or mail me the name of the book. OCF would like to ward people off of a book that has such poor information that may even be harmful.

I am thinking of you guys & hope you can find a way of having peace in your lives in all of your crazy turmoil.

Lorie, You and Don must be feeling overwhelmed. That is way too much scary news for anyone to have to deal with. It must be a mighty temptation to want to believe in questionable advice - like the book you refer to. It would be great if you posted the name of that book here. My thoughts and prayers are with you two, and I hope you find some answers. Stay in touch with us if you can. Be strong. Tom

Thank you all for your words of love and support.

Life continues to throw us hard balls...they neglected to tell us that the pallative radiation Don is receiving for his bones would possibly cause more pain before it helped take the pain away. Don is in complete misery. I just pray daily that it kicks in soon.

Anyone have suggestions on helping him deal with the anger and fear? It is causing not only torture in his mind but it spills out and causes problems between us. I don't want to spend what time he has left argueing.

The title of the book that I referred to is "The Cure for all Advanced Cancers" by Hulda Regehr Clark, Ph.d., N.D. it is the follow up book to "The Cure for All Cancers". Thanks to all of you, especially those dental professionals, that kept us from going down the wrong path.

Lorie

It's very prominent in the Quackwatch listings

http://www.quackwatch.org/search/webglimpse.cgi?ID=1&query=Hulda

I hope that there is a special place in hell for people who try to take advantage of our situations.

I am very sorry to hear what Don and you are going through. Counseling and meds are the best advice I can give. It sounds to me like they could do a better job of pain management and also something for anxiety as well - that may help some of the anger issues.

You're right about one thing - we only have today and if we spend it it anger it's lost forever.

Lorie, I am so sorry to hear about your developing situation. Please consider calling Hospice. They have medical and emotional resources that might be very, very helpful to you and Don right now.

There is a great little book called: "When bad things happen to good people". I cannot remember the author's name but it really helped me through a tough time a few years ago. Also, "On death and dying" by Elizabeth Kubler Ross (sp?). She is a widely recognized expert on the topic of terminal illness and her books are easy to read - even though the topic is very tough.

My thoughts are with you both. Tom

Lorie,

The book that Tom mentioned is by Rabbi Harold Kushner and it is a wonderful book. I read it many years ago. You might find it to be very helpful.

You both will continue to be in my prayers.

Jerry

Lorie, I, too, hope you will seek help from Hospice for both your sakes. Do you have support from family members? You are traveling a road that all of us have nightmares about. I am sending you hugs and prayers. Amy

Thank you for all your wonderful love & prayers.

I have a good friend who used to be in charge of our local hospice group, so I am very familiar with it. Unfortunately when I lovingly mentioned hospice to Don he instantly got mad and said that would make him feel "more" like he was dieing. I tried to explain it more with no success. I will try again at a later time.

I will definitely look up the book you mentioned Tom, thanks.

The radiation for pallpative therapy on his bones is now complete. We have a follow-up appointment on Monday 5-8-06, that is where the doctor tells us if there is anything else they will be able to do. But I must tell you that I am afraid Don has already given up. His mood is so down and crumpy all the time that I'm not so sure what the doctor will be able to say to help. I just keep praying that the Lexapro they put him on kicks in soon. At least the pain management group at Cedars Sinai is awesome and they have him out of pain, for the most part, and he is finally able to sleep.

Thanks again for all your support & prayers.

As for me...when I get angry and very frustrated with him I go for a ride. I actually went to the mall for the first time in months...it was great. It gave me a breather and I was able to go back to him without anger...thank you God!

Lorie

I am so glad is pain is undercontrol. I know what you are dealing with is overwhelming right now and I hope you can gain some strength from this board - I know I have many times, even if it just got me through the night knowing I wasn't alone. I know many people react the way your husband did to the mentioning of "hospice" but I think his feelings will change in time. Maybe he's just not ready for that yet. In our desperation to feel like we had control over something we mentioned it to my brother probably a little too soon. He couldn't give us a verbal response, due to the removal of his tongue, but I could see in his eyes he thought of that as giving up and he wasn't quite ready to do that yet. But withing a month, he saw we needed the services of hospice as much as he did and he never fought it. I thank him so much for that. Please focus on the time remaining and try to make great memories. Don't give up your hope for a miracle - they do happen. We didn't get our miracle, but I think that just increases the odds of others getting theirs, because miracles have to happen to somebody.
Best wishes.
Tonya

I am very sorry to hear about Don's condition. There are just no words. I hope that God brings you and Don strength during these difficult times.

Dear Lori,

As you no I also am in Hospice and am receiving no further treatment. They are a great group of dedicated people. They helped with the pain control right away. Sounds like you got the same group of Hospice volunteers!!

As far as Don being grumpy I can understand his feelings. Leaving at 40 is alot different than leaving at 56. My kids are adults and doing fine. I have accepted my fate, have no anger and just want to enjoy the time I have left with my family and friends. I am not a bible thumper but who knows that where we go is not a better place than where we are?
I will miss my family and wife of 34 years the most. Secondly I will miss all of the members on this site.
I guess I have chosen to live the rest of my life in peace. I hope Don can come to that point. Your both special people to me. I am so glad we got to meet in Vegas.

Love Ya, Danny Boy

Tonya- Thanks for your kind words. I am sorry to hear that you've already lost your brother, but I am glad he realized you & your family were also in need of care.

Danny Boy...your words ALWAYS mean the world to me. I just keep picturing your loving cheerful face the way it was in Las Vegas. That was such a great time for us. We still talk about it to this day. Everyone from the site has given us soooo much...love, support, prayer, and most of all a sense of "not being alone" in a horrible world or oral cancer.

Don & I had a little break-thru tonight after another arguement. He finally admitted that he takes out is fear and anger on me. He admitted he is just sooo angry at cancer and afraid of what death holds. We talked for a long time, cried for a long time and just held each other tight. We cried for lost hopes and dreams and remembered all the love & fun & even fights we've had.

This is not an easy road but I think maybe we are finally on the path together and I hope that we can just focus on holding each other's hands along the way.

Thanks for everyone's continued love & support,

Lorie

Lorie,
I like to think that all oral cancer sufferers are family - one of those families you wish you didn't have to be a part of, but family all the same. I think my brother and fellow suffers will be there to hug your husband, make him feel safe and show him the ropes. It's what family does and we are family. Bless you both. We love you.
Tonya

Lorie,

I am trying to catch up after a bit of absence from the neighborhood and I am truly sorry to hear the news of Don and you. I am at a loss for words and I can't even imagine what you have been going through the past several months.

Susan and I still talk often about Las Vegas, too. It was a very special time for us in many ways.

Last night I was looking over my son's graduation announcements and the inside flap had the wording we all pass around in some form of another. I would like to share it:

"Dance like no one is watching; sing like no one is listening; work like you don't need the money; love like you've never been hurt; live like today is your last."

Even in your toughest battles in this horrible war you are fighting I am praying for His comfort and peace for you and Don and that your hearts will always be filled with love.

With love,

Ed

Ed,
That's a great quote and I find some solice in that. My brother did all those things from the minute he was born. Although he was 4 years younger than me, he had lived 50 times the life I have or will ever live. Here's to him and others like him who have the courage to take life by the horns and live it to its fullest without fear. My hat's off to you all.
Tonya

Lorie,
Like Ed I too remember the OCF convention like it was yesterday and Don looked great in the photos. I am shaken, stunned and saddened by the news. It's taken a while to get up the nerve to reply. I was just several months ahead of Don also with a stage III/IV tonsil cancer. He is living my nightmare. I don't think that I have slept an entire night since the end of treatment.

Tell Don that I'll be keeping you both in my prayers and that I hope that he finds peace and acceptance. The hospice people just want to make you as comfortable as possible and in your own bed. They helped with my Dad and my stepmother and they were terrific and he or I wouldn't have gotten through it without them.

God bless you both.

Love Gary & Leah

Lorie,

I am not too far from you and my heart goes out to you and Don. If there is anything at all the I can do for you please do not hesitate to ask. Please know that you are in my prayers and thoughts daily.

Hugs,
Dani